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Celine Dion smiling outside Valentino fashion show during during Paris Fashion Week Haute Couture Fall/Winter 2019/2 © Getty

Celine Dion finally 'happy again' after 17-year secret struggle with Stiff Person Syndrome

 The 56-year-old Canadian superstar will open up in new Amazon Prime show, I am: Céline Dion on June 25

Kate Thomas
Lifestyle Managing Editor
Updated: May 29, 2024
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Celine Dion has detailed the extent of her battle with Stiff Person Syndrome in a new interview, revealing her symptoms began as early as 2008.

The My Heart Will Go On singer, 56, announced her diagnosis to the world in 2022, but in a new interview with VOGUE France, the star admitted she has been dealing with side effects from the rare neurological disorder for the best part of two decades.

WATCH: Emotional first trailer for I Am: Celine Dion

Imploring her fans to not ignore any adverse medical symptoms of their own, she said: "It might seem weird to say this, but I was happy when I was told what it was. I was finally going to be able to live with this illness and no longer suffer from it.

"I hope this won't scare people off [from getting a diagnosis] and will alert them instead. It took me 17 years to understand what was going on. I beg of you, don't wait that long!"

Celine Dion has revealed her Stiff Person Syndrome symptoms began as early as 2008
Celine Dion has revealed her Stiff Person Syndrome symptoms began as early as 2008

Celine's secret health battle

First noticing something was awry in 2008 during her Taking Chances world tour, the Canadian superstar said her voice would tremble when she hit the high notes.

"I was struggling to control it. I was able to go very high, but then my voice was wracked with kind of spasms. I did what one is meant to do in these days: I went to see a doctor," she recalled.

After being told her vocal cords looked fine, Celine returned home to Las Vegas and embarked upon another five tours after that. She then began to experience muscular stiffness.

"I was struggling to move. I had to lean on something to be able to walk," the star said.

Celine Dion in a still from "I Am: Celine Dion"© Prime Video
'It took me 17 years to understand what was going on. I beg of you, don't wait that long!,' she said

The neurological disease, which affects one in a million people, causes severe muscle spasms and impacts motor functions, making public performances a serious challenge.

Seeking the help she needed

It was only when the Covid-19 pandemic hit that Celine was able to put her health first and prioritise really getting to the bottom of her strange symptoms.

Holed up in her $1.2 million Las Vegas home with her children René-Charles, 23, and her twins Eddy and Nelson, 13, whom she shares with late husband René Angélil, Celine set about finding the cause.

"I told myself the universe had sent me a sign with Covid: I needed to make the most of this time of rest to discover what was going on," she told VOGUE.

"For years and years, I shut my eyes to it. I hid it from my friends, my family, my children… I held out for as long as possible. I needed to stop being so brave. I needed to take care of it."

Celine Dion performs on opening night of world tour Courage in 2019© Getty
It was only when the Covid-19 pandemic hit that Celine was able to put her health first

Now, the star is focused on sharing her news with the world in her new documentary, I Am: Celine Dion, set to drop on Amazon Prime Video on June 25.

Reflecting on what the documentary taught her, Celine mused: "What is my purpose in life? To be a singer? A spokesperson for stiff person syndrome? A mother? Or all this at the same time?

"Today marks the beginning of the rest of my life. I've never sung this song before. But it's going to be the most important song of my life."

Celine's Stiff Person journey

What is stiff person syndrome?

Stiff person syndrome is a rare neurological disorder.

Symptoms of stiff person syndrome include muscle rigidity in the trunk and arms, often triggered by noise, touch and emotional distress. Celine's condition is characterised by muscle spasms.

People with stiff person syndrome suffer from frequent falls, because they lack defensive reflexes to save themselves. Sufferers are often unable to walk or move, and it's twice as common in women than in men.

It's not known what causes the disorder, and it's often misdiagnosed as Parkinson’s disease, multiple sclerosis, fibromyalgia, psychosomatic illness, or anxiety and phobia.

The disorder doesn't have a cure, though anti-anxiety drugs, muscle relaxants, and anti-convulsants. Pain relief can also improve symptoms.

In October 2021, Celine concerned fans worldwide she would be delaying her Las Vegas shows due to "severe and persistent muscle spasms".

eline Dion heads to Fallon Show in red velvet and silk suit on November 14, 2019 in New York City. © Gotham/Getty
The I'm Alive singer shared her diagnosis with the world in 2022

This was followed by the cancellation of the North American leg of her Courage world tour in January 2022, and later the axing of her European dates.

In December 2022, Celine bravely announced her diagnosis to the world, telling fans via a moving video that she was suffering from Stiff Person Syndrome

The star's career took a backseat, refraining from public appearances as she focused on her health,

Since December 2024, Celine has slowly been making a return to the limelight. She "sang a few notes" when she made her first public appearance in over three years last winter. 

Celine Dion and her three sons at a The Rolling Stones concert, pictured backstage with Mick Jagger© Instagram
Celine and her three sons at a The Rolling Stones concert, pictured backstage with Mick Jagger

Celine made a grand return to the stage during the Grammys in February, receiving a standing ovation from the audience when she made a surprise appearance to present Taylor Swift with the Album of the Year award.

DISCOVER: Celine Dion's rarely seen sons: 12 photos of her brood supporting her through her diagnosis 

She has also been pictured with her teenage sons on a number of occasions, including at The Rolling Stones concert in Vegas.

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